posted
Hi everyone, I'm new here. I started out about 2.5 years ago with the flu or maybe from a tick bite? Weeks later I developoed twitches head to toe and still have them to this day. Current symptoms along with the twitches are as followed, Fatiqued, pin and needles,headaches, tremors, jerks or myoclous?, Aches and pains,heart palpatations and many more. These are the following tests and doctors I've been to. Western blot at quest lab, bands 23,28. Neurologist 8. Infectious disease doctor, test were negative. Mri' back,brain normal. All blood work normal except epstein barr slightly pos. anti cardio lipid a little high. thyroid border high. Endocrinolgist, rheumotologist all normal. sleep study normal? diagnois bfs from neuro. I'm an advit outdoor's fish, hike you name it. Been bit many times. Any thoughts of what to do next.
Posts: 64 | From New Jersey | Registered: Dec 2007
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First of all, Quest is not very reliable for Lyme testing, and you had Lyme specific bands show up with them, that makes me suspicious as normally their problem is with false-negatives.
I would go to a Lyme specialist (LLMD) for evaluation. LLMD's do very thorough differential diagnoses, so if it's not Lyme, hopefully he'll be able to tell you what it is.
You can post on seeking doctors to find an LLMD near you.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tailz
Unregistered
posted
I have Lyme and babs, and I don't remember any tick bites - only fleas and mosquitos. IGeneX is the best lab for testing though. I also test positive for EBV.
I also noticed my symptoms seemed to increase whenever I was on the computer, the cordless phone (even the landline phone now), whenever the heat would run more. I have Electrical Sensitivities, too - something even harder than chronic Lyme to get docs to believe in.
I personally think these infections and EMR exposure are somehow linked. You might want to check out this forum, too:
posted
My symptoms when I first got hit by the Lyme/Babs bug:
Shortness of breath, chest pain, abdominal pain, joint pain, headaches (not little headaches, migraines), pins and needles in my hands and feet, dizzyness, air hunger (never feeling like I had enough oxygen), sleeplessness, anorexia, acid reflux, aches in my groin, lost about 30 pounds etc I basically didn't know how I was going to make it to the next day. **** I didn't know how I would make it to the next hour. I would walk at a snails pace all day long.
Its sounds like you have some of these symptoms. Like I said I have both Lyme and Babs, so maybe you got lucky and only have Lyme.
Get yourself to an LLMD. I know they aren't cheap, and the lab work isn't cheap, and the meds aren't cheap, but you have the rest of your life to make back that money and get yourself straight financially.
Posts: 158 | From Santa Monica | Registered: May 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Get thee to an LLMD*)!!!
I agree- MAY be Lyme or TBE related- or something else a LLMD may be able to help you with- theya re great at differential diagnoses of similar diseases-!!
Don't waste time- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Sure sounds like Lyme to me. I too had the twitching (fasciculations) body wide. I also suffer from tremors and myoclonic jerks. After 18 months of treatment my myoclonus is pretty much gone except for an occasional jerk at bedtime.
My bodywide twitching lasted one full year, but then again it took me one year to be diagnosed. I spent $80,000 in insurance monies saw upwards of 20 Dr.'s and no one thought to test me for lyme.
Finally I tested positive by CDC standards. My body wide twitching is gone. It's usually caused by Magnesium loss because of lyme. If indeed you test positive for lyme start on a magnesium supplement asap and it'll help rid you of the twitching. The twitching alone drove me mad. It's completely gone today.
I'm 18 months into treatment and am back to 90%. I would definitely find a LLMD near you and get tested. If you don't have it they will be the first ones to tell you.
If you do have lyme a LLMD is the only Dr. that can get you on the road to recovery.
Barb
Posts: 281 | From san francisco | Registered: Jun 2006
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I happened to read your post regarding muscle twitches and myoclonus, and I too have these symptoms along with blurry vision, dizziness, and tinitus. I had a UTI a month or so after removing the tick, and thus wasn't getting much sleep due to the pain at night. The doc put me on Ativan for rest, and that is when the myoclonus and twitching really started. I never even thought about Lyme when I pulled the tick, and thus have spent about 4-5 months with docs, chasing after the cause of these things. I attributed the myoclonus and twitching, to removing myself from the Ativan after the symptoms started.
I've been tested through Igenex [Western Blot], and the IgG showed positive for band 41. My IgM test showed indeterminate for bands 23-25, 34, and 41. A nurse practioner has me on 200 mg. of Doryx, plus 1000 mg of Biaxin. I told her that I wanted to be treated, just in case.
Some more history about my situation....I was on 200 mg. of Doryx at the time of the tick removal, since I still see a Dermatologist for acne [even at age 44!]. I asked my neuro about possible Lyme, when all of the other possibilities were exhausted, but he seemed to think that being on the Doryx at the time, would have resolved that problem [honestly, I don't think he even wanted to address Lyme]. He had given me an ELISA test, which came back negative from LabCorp. I told him that since I was on abx at the time of test, in addition to the worthlessness of ELISA tests, that meant nothing in terms of negative results. Of course, he didn't act as if he was listening.
I know this is a long post, but it was to give you a history of my situation, as well as ask you two questions. You stated that you had 18 months of treatment. I read somewhere, that you need one month of abx treatment, for every month of infection. So do you feel 6 months of treatment should be sufficient for me, based on my pulling of the tick in early August? Also, why such long treatment for you, if you were infected for one year?
-------------------- Craig Posts: 207 | From Tallahassee, Florida | Registered: Nov 2007
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posted
Craig, in a You Tube video someone posted, the dr mentioned it took 3 months of treatment for every 1 YEAR of being ill.
That's a new one I haven't heard! I think it would be more true for those who have been ill for several years, but maybe not for those who have been ill only a few months. IMO....
None of those formulas are set in concrete, that's for sure!!
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